Justine Hill makes it easier for patients to participate in clinical trials
Seeing and communicating to individual needs is crucial in patient centricity. Meet Justine Hill, the capable research coordinator at British Research Panel. She is easing the journey into trials for patients.
“I’m really enjoying the work. I’ve been talking to many people who are really motivated to join trials,” says Justine Hill.
Working primarily with the members of the British Research Panel, Justine Hill uses her extensive knowledge of what works for patients that are eager to enter trials. She gets to know them through her contact with them before and after trials.
One of the things she has been made acutely aware of is how seemingly difficult it is for many patients to enter clinical trials. Through the panel, Justine Hill is part of a change that makes this better.
“Most new members have no idea how to access trials themselves, and the British Research Panel makes it so much easier for them to join. Furthermore they like the feedback that they get from us and how the panel works. It all makes my job easier. As a research coordinator, I like this approach both on my behalf and the patients,” Justine says, pointing out one of the differences between British Research Panel and others:
“Here in the UK patients are often asked to fill out all sorts of information and often they don’t hear anything again,” she explains.
Listening to patients is key
Recently Justine Hill has been looking for patients with moderate to severe eczema for a clinical trial. No matter the diagnosis, she makes sure that speaking with possible candidates is always thorough and empathic experience.
“I make contact by phone, when a trial becomes available for their condition here in the UK. My chat with them is the first step in finding out if they are suitable for the trial. Is the research in their area or are they willing to travel? I do a pre-screen, ask questions about their condition, if they are on medications? All to find out if they have what the researchers are looking for in a particular clinical trial. Then the site staff decides,” Justine explains.
This is the part of the job Justine really enjoys. Taking each patient seriously is the heart of patient centricity.
“I get to hear all their stories and have a conversation, which is a real privilege. I hear how their daily life is affected by their diagnosis. Most hope to take part in a trial for better treatments,” says Justine.
This time the response from members wanting to participate in the eczema trial took her back a bit:
“I was quite surprised. But it was a pleasant surprise. There was such a need for this trial,” she says.
In any trial, a lot of factors have to align just right in order for it to go forward and unfortunately, the clinical trial had to move ahead without the members referred. For Justine, that meant using all of her communicative talents.
“Obviously, a lot of my work is about managing expectations. But patients still appreciate the feedback and being followed by us, and appreciate that they might be contacted for a new trial. Even when we can’t offer participation, they are very positive and understanding, and one of the reasons is that our communication is clear and understandable,”Justine Hill explains.
Trials give people hope
Her previous experience includes working for UK research networks, recruiting to trials as a nurse and as manager deploying nurses to sites with a shortage of resource.
Justine Hill has often been reaching out to rare disease patients hoping for new trials. Often their condition is so rare that there may be only a few patients in the UK. Another fact that she has faced throughout her career is how patients are often treated differently, not patient centric:
“The treatment in the UK is very dependent on where you live, it varies a lot, and this has been an eye opener to me. It’s been very interesting to get to know more about this aspect of the lives of patients. I think it’s incredible how they cope through it all,” Justine says.
She is certain that the need for bringing people closer to clinical trials grows and is vital for both science and patients.
“The trials give people hope, because they get looked at and are monitored, and patients feel that they have the possibility to contribute,”says Justine Hill, adding that she wants to keep up her good work for patients in the years to come.
“I really feel that I’ve got the best job in the world!”